Coping With Epilepsy Medikidz Comic Book Explains Epilepsy
Sponsored Advertisement
 

Go Back   Epilepsy Forum > Peer Support > Surgery Central



Reply
 
LinkBack Thread Tools
  #1  
Old 09-30-2014, 03:43 PM
bdhshakes's Avatar
Joined the Party
 
Join Date: Oct 2009
Location: Salt Lake City UT, USA
Posts: 28
Thanks: 11
Thanked 8 Times in 5 Posts
Send a message via Skype™ to bdhshakes

Need VNS opinions


Been a while since I've been on here but sometimes of the time I trust your guys opinions more than my doctors

I've moved and had to change to a new epileptologist so I'm still getting to know him, his bed side manner sucks but he seems to know his stuff. Over the years I've tried so many different medication cock tails and I tend to take a long time to get used to them so it really is a pain changing things up. Nothing has seemed to work to get my seizures under control. My new doc has me trying Vimpat and it seems to be helping. We are trying to replace depakote with vimpat. I plan to try and stick this out in hopes the new combo works (currently on trileptal, lamictal, depakote, and vimpat. )

On our second appointment he asked if I had considered a VNS. I haven't wanted to consider it before since there was a lot of medications I hadn't tried yet. But now i'm starting to reach the end of the rope, medication wise. So i'm really considering doing it. Although during some research across the web I hear a lot of the horror stories out there that seem to stem from defect devices and poorly "installed" ones.

Basically I am hoping to hear from you guys, preferably anyone who has a VNS, about your thoughts on VNS. I'm really considering it but I still want to get all the info I can. Any information or personal experiences you guys have would be GREATLY appreciated.

Oh I should mention my seizure type. I have simple partial onset seizures.

Thanks in advance!
Reply With Quote
  #2  
Old 09-30-2014, 09:29 PM
arnie's Avatar
Venerable Voice of CWE
 
Join Date: Jan 2013
Location: The beautiful Pacific Northwest U.S. (in the rain shadow of the Cascades)
Posts: 1,146
Thanks: 484
Thanked 846 Times in 526 Posts
Here's more info than you may want about my experience with the vns:

http://www.coping-with-epilepsy.com/...erience-22263/

Best of luck to you!
__________________
Epilepsy: When Your Brain has a Mind of its Own.
seizuretracker.com
Reply With Quote
  #3  
Old 05-19-2015, 08:05 PM
Topcat's Avatar
Weaving the Community Fabric
 
Join Date: Jan 2010
Location: Phoenix, Az
Posts: 335
Thanks: 237
Thanked 72 Times in 59 Posts
Just speaking for myself my VNS was the only thing that really did much to help me
Reply With Quote
  #4  
Old 06-05-2015, 10:45 AM
Joined the Party
 
Join Date: Apr 2015
Location: Northern California
Posts: 61
Thanks: 5
Thanked 29 Times in 21 Posts
I decided against it, the odds it would work were 60/40 and if it didn't work my doc wasn't going to take it out.
Reply With Quote
  #5  
Old 06-25-2015, 01:32 PM
bdhshakes's Avatar
Joined the Party
 
Join Date: Oct 2009
Location: Salt Lake City UT, USA
Posts: 28
Thanks: 11
Thanked 8 Times in 5 Posts
Send a message via Skype™ to bdhshakes
It's been a while since I wrote this thread but I thought I would reply with my results.

I decided to get myself a VNS back in November. I am really happy I did. Not only has it been helping with my seizures but it has been great for my overall mood and energy which has been numbed down by my anti-epileptic drugs for years. It interrupts a seizure everytime I am able to use it during a seizure. I can't always grab it to activate the VNS, for obvious reasons, because I'm mid seizure. But it does work for me that way. I seem to tolerate the side effects of it more than others, or so my neurologist says. I just get an ocassional cough when it goes off, but there is always a tightness and the hoarse voice. But after a while you get a bit used to it and it becomes less severe. But that has how its been for me anyway.

I can't say I would recommend it to everyone because I know it will be different for everyone. But I can say it has been a good decision for me and I wish I had done it 9 years ago when my old neurologist originally brought it up. Thanks for your comments everyone!
Reply With Quote
The Following 2 Users Say Thank You to bdhshakes For This Useful Post:
Cint (06-25-2015), Nakamova (06-28-2015)
  #6  
Old 06-25-2015, 02:33 PM
Cint's Avatar
CWE Supporter
 
Join Date: May 2008
Location: Denver, CO
Posts: 5,495
Thanks: 1,150
Thanked 3,163 Times in 2,054 Posts
bdhshakes,

I'm happy to hear the VNS is working for you. May you continue to interrupt your seizures.
BTW, I feel the same about the VNS and it works for me that way, too.
__________________
"The Golden Rule is that there are no golden rules."
~George Bernard Shaw
Reply With Quote
The Following User Says Thank You to Cint For This Useful Post:
bdhshakes (06-25-2015)
  #7  
Old 06-27-2015, 01:25 PM
Belinda5000's Avatar
Account Closed
 
Join Date: Sep 2007
Location: Georgia
Posts: 2,241
Thanks: 429
Thanked 596 Times in 474 Posts
bd shakes,

I'm glad the VNS works for you, I didn't have any such luck for long so It hope continues to do great with you for your seizures also.I didn't just have one seizure type.I was very reluctant to get one after a failed brain surgery.
Reply With Quote
  #8  
Old 06-28-2015, 07:39 PM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 16,349
Thanks: 938
Thanked 7,272 Times in 5,362 Posts
Great to hear it worked for you bdhshakes. It would be nice if there were a way to predict who would do well with VNS and who wouldn't...
Reply With Quote
  #9  
Old 08-04-2016, 10:31 AM
Weaving the Community Fabric
 
Join Date: Mar 2016
Posts: 229
Thanks: 2
Thanked 65 Times in 52 Posts
mine works for small partials. but partials with a 2nd gen. or grand mals.....nope.
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Opinions on VNS SoonToBeMommy The Kitchen 13 10-24-2013 08:24 PM
Need Some Opinions Sylvia The Foyer 9 04-09-2013 02:26 PM
New here..Opinions, please! Rose1902 The Foyer 3 04-15-2012 12:34 PM


All times are GMT -5. The time now is 08:28 PM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.